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    • #22581
      Eric Jensen
      Participant

      Me, “pre-ALS,” is a 100% social animal. I would walk across the room to shake hands with someone I recognized. I would keep a conversation going for hours with one or many. I love how people interact with each other. I was great! I understand that people,  now knowing that my condition is terminal, forces them to face their own reality. I don’t know if being a hospice nurse allowed me to see past my own demise and treat them no different then anyone. I now know, that now, in a wheelchair the majority of the time, I seem to be avoided by many of those who sought my conversation. I call this my, “social death.” I am now at groin level with many people and I feel like a child pulling on my moms arm for attention as she speaks to her other, “mom friend.” I also get the, distorted smile, from my friends. They say, “it’s great to see you,” as their cheeks squeeze like they drank lemon juice. I’m not dead yet by the way. Thanks for letting me share.

    • #22589
      Heide Miller
      Participant

      I know what you mean and how you are feeling about this. I have PLS, not in a wheelchair yet, but my mobility and speech are severely affected. I also have a close friend with MS, totally bound to her wheelchair and unable to use her hands.We agree that disability comes with a cloak of invisibility – few people are able , it seems, to accept one and interact sincerely.They are afraid.  We just have to keep looking for those few !

      • #22612
        Eric Jensen
        Participant

        Heide,

        Thank you for sharing what you go through. I attend a, “large church.” The way my days go, because I do have a few muscle fibers left in my legs, lol, I may be using a walker in the morning but soon I can I longer walk because of weakness and exhaustion. I say all that to paint the picture. Some church people see me during my “best,” right now physical state using a walker. Then, their friend may see me in the wheelchair at night. See the confusion, doubt, fear, etc. We are all human and mainly have the commonality of we want to be aceleres amd feel normal. We are all perfectly made. Thank you again.

    • #22592
      Kathleen B (Katie)
      Participant

      Yes, indeed…being in a wheelchair is a vey sad experience that we share as users.   My definition of how it feels: I am a left out and a leftover.  Many try to understand, even close friends and caregivers think they are keeping us INcluded, by having mobility. The reality is simply a lack of experience of BEING the person in the wheelchair !  For sure, it makes one feel like a child again…interrupting conversation if we can (when those conversing & walking behind us might notice a hand signal that we want to join in); or only being able to go places and do things when there is someone willing & able to manage the person AND the chair correctly.  The loss of independence & freedom from being a very active and social being is a devastating loss all its own.  I’ve shed many silent & hidden tears over this loss of self piece — just since needing to use a  wheelchair or power chair more in the last 6 months. The most brave (speaking up) I’ve been so far is to now request others to also sit down near me if a photo is to be taken.   That way I do not have to be the child-like presence in a printed, framed photo of peers, family, friends.  I truly think everyone means well; I’m not complaining…there are just ‘new’ facts of life that occur continuously in this ALS journey—the relentless challenge of  ‘living well while living with ALS’, and maintaining a ‘quality of life’.   Thanks pALS for listening & understanding!

    • #22594
      Dagmar Munn
      Keymaster

      I can relate to every scenario that has been mentioned! Although I’m not in a wheelchair, I do have to rely on using my mobility scooter when out and about and especially when attending social situations. And yes, it’s a shock to find myself at eye-level to belt buckles and handbags …and always having to look up.

      I think we pALS have to first get over our unresolved anger at the wheelchair, ALS, and life for putting us in this circumstance. Don’t bring that anger with you to the social gathering and be insulted when others don’t know how best to interact with someone in a wheelchair. Most just don’t know – – so it is up to us to be brave and assertive and guide folks in what and how to do it. No one wants to interact with a person who is in a wheelchair and has the body language and expression of a bad mood.

      Let your close friends and family spread the word that others should pull up a chair next to you. To include you in conversations and in group photos. I bring along my voice amplifier so my voice can be heard over the din of mixed conversations.(read about my amplifier here: https://alsnewstoday.com/columns/microphone-voice-hear/ )

      And I wrote about my own experience and offer tips here: “The View from (Down) Here” https://alsnewstoday.com/columns/sit-scooter-wheelchair/

      It’s a challenge for us pALS – – but an opportunity to teach others too.

      • #22597
        Amanda
        Keymaster

        Dagmar,

        Many, many years ago (around 1990) when I was a college student, I held a door open for a women in a wheelchair. She was furious and she screamed all kinds of obscenities at me!  Well, I was mortified, terrified and shocked to say the least.  The worst part was that I didn’t hold the door open just because she was in a wheelchair! I held the door open because someone was behind me, she was an older woman and she was in a wheelchair carrying a bunch of books and things on her lap!   I was raised that you hold the door for people  if they were older, had children, had their hands full, or anything that would make it more challenging for them than myself.  I was taught to hold the door open because that was the right/polite thing to do even if they were able bodied!  I still do it although I have to admit that to this day when someone is in a wheel chair now I ask, “Hi, would you like me to get the door for you?”   It is amazing how one experience sticks with you for life.   When I think about the woman who yelled at me, I sure hope she was just having a bad day, and a broken leg or just had leg surgery and it wasn’t anything permanent. Of course, now with ALS impacting my family so much, and the realization of knowing that it is probably in my future, well I want to learn as much as I can about how pALS feel and make sure that I help advocate and educate others.  I try to be the change in the world that I want to see!  It doesn’t cost us anything to be kind.

        • This reply was modified 3 weeks, 3 days ago by Amanda.
      • #22606
        Chris King
        Participant

        I related to Eric’s post as I’ve increasingly experienced the social disconnect the last 6 years dealing with bulbar onset PLS. It was almost immediate once my speech and gait were so compromised and I was filled with rage as I could still contribute to the groups and organizations which I’d been involved with including church. The ALS clinic suggested CBT cognitive behavior therapy, now at 76 I was skeptical but the therapist listened and cared. She’d gave me permission to be angry but not be consumed by the disease, to coexist by identifying my new life in situations not my perceptions of what was and might have been. It’s not always easy but it gives me the ability to be me, to interact with family and friends on a new playing field doing things I love in PLS time. You know it’s very good most days and when it’s not, I try to accept those times by still being me not a victim of PLS!

        • This reply was modified 3 weeks, 2 days ago by Chris King.
        • #22722
          Eric Jensen
          Participant

          Chris,

          Thank you for sharing your experiences. As believers, I am told to believe that people will fail me. I have and always had, “unknown expectations,” in concern to others and how they treat me. It is hard because we are human and want to be appreciated and given equal respect.

    • #22599
      Amanda
      Keymaster

      Eric, Heide and Kathleen (and all members feel free to pipe in!) you share some great points!  ALS is limiting enough and then to add other people’s uncomfortability with other people’s disabilities and illness, just WOW!  That is a lot to take in.  Dagmar had some great suggestions and ideas on how to alleviate some of the discomfort.  Has anything else worked for you? Can you think of any other ways to ease the situation and to make social situations more enjoyable and typical for pALS?

      Amanda

    • #22603
      Mark
      Participant

      It saddens me that this experience is happening to others with ALS or those in wheelchairs.

      I guess I’m very fortunate in that my social friends have remained my social friends. I too was a socialite, I love being and talking with friends. Now I confine myself to my lounge chair and a friend will come visit, pull up another chair next to mine and we chat.  Due to Covid, we are very cautious, no hugs or kisses. Many of our friends are couples, so they come as couples and my wife and I enjoy the company.
      We limit the visit to an hour because I’m also using a BiPap to help with my breathing. I’ll take it off, chat a bit and when winded, put the mask back on. Once a friend was insulted when I asked him to leave after an hour, of which he was for warned.  After he pouted for a couple of weeks, he finally understood that it wasn’t about him, but about me.

      I wish the same good experience was your experience.  We are going thru an awful enough lifestyle, friends should be more caring and giving.

      My wife has a hard time when asked How’s Mark doing? There is no good answer, but the fact that they ask, means they care.

      We have a few caregivers and 1 in particular thinks she knows how everything should or shouldn’t be. She has no clue how I feel or what I’m experiencing or my fear of falling etc.  and she is studying to be a nurse. You may ask, why do we have her in our home. Well basically she does a good job and we are at her mercy-it’s not easy finding a response caregiver.
      I didn’t mean to go on and on and I thank you for listening.

      I hope your friends realize you are as human as they are and ALS and what it does to you, shouldn’t make any difference in who you are as their friend.

    • #22604
      Pete Caluori
      Participant

      Amanda, please don’t let someone who may have been having a bad day spoil your good nature and manners.  If you held a door for me I would profusely thank you for your kindness!

      • #22646
        Amanda
        Keymaster

        Thank you Pete!!

    • #22613
      Richard Maloon
      Participant

      pALS?  = patients with ALS? I am an ALS patient for almost 3 years. I tried to add Radicava ORS but was rejected due to income. (<span at82 yrs. have to deplete IRA, No Roth IRA like now.)  Been on </span>Riluzole <s”>since diagnosis plus L-Lysine 5-10 Grams! daily. </Do not miss in-person social interactions but enjoy exchanging ideas using Zoom sponsored by our New England ALS Association, particularly end-of-life options. I believe I will not want to be bedridden or fed through a tube. I walk and talk fine, but no strength in my hands. In palliative care now.  Recommend joining local ALS Zoom meetings. need a positive attitude only.   R

      • This reply was modified 2 weeks, 5 days ago by Richard Maloon. Reason: html code got in there somhow
    • #22615
      Leslie
      Participant

      Thank you for your post. I have been saying this to my wife for awhile. She realizes that it is hard for me, as I have always been a people person. I just had an old friend tell me that he can’t think of me because it terrifies him.

    • #22616
      Andrea Krzysko
      Participant

      I have PLS and have been in a wheelchair for the past 5 years. When it came time to move to a motorized chair 2 years ago I elected to pay out-of-pocket for a power seat elevation system since Medicare did not pay for this feature. It has been a game changer for me in social situations since I can now talk face to face with others. It provides independence in day to day activities from obtaining objects from hard to reach areas to lifting me up just a bit as I transfer from one surface to another.

      You may say that your resources are already spread thin and this is a luxury that you cannot afford. I get it … however, there is an effort afoot to convince Medicare that power seat elevation should be covered. You are an essential advocate for this effort. All you need to do is submit a comment about your support for coverage to Medicare by Sept 15th. You can find information and links for submission of comments at the Rise for Access website https://www.rise4access.org

      It may take a while for this to change, but I believe that administrators can be convinced when they hear our stories.

    • #22647
      Kathleen B (Katie)
      Participant

      THANK YOU for posting the link to rise access!  I got a note on it from an ALS local group in m state, but am not tech savvy enough to share a link.  I just got my ‘lift feature’ chair today— doing my letter tomorrow!
      AND, we were made aware (again local ALS support group Zoom meeting) that an organization known as Team Gleason DOES have a grant program for covering the lift feature BEFORE a power chair is ordered.  That was the blessing we found out about a week before going for wheelchair seating appointment—WOW!—check out teamgleason.org  —Steve Gleason was a football player, now a pALS —and started a foundation to provide for PATIENT needs that are not Medicare/other insurance covered, etc.  Great group of people!!

    • #22657
      Maggie Broeren
      Participant

      Hi all!

      I try to raise my wheelchair as far as the elevator component will take me. This helps me hear people better, and likewise they can hear me better. (My voice is getting quieter and softer as the disease progresses.)

      Dialogues  or 2-way conversations beyond 10 minutes are becoming more difficult. Two shortcuts I have been using lately

      • I will ask my conversational partner to ask “yes/no” questions
      • Sometimes I defer to my spouse, Michael and he can relay the story in more interesting detail than I would. Mind you, this is not easy for me to have Michael speak for me!

      Maggie B

    • #22691
      Kathleen B (Katie)
      Participant

      I applaud you Maggie for your post—your voice of reality is stated so well—indeed a team player of a dynamic duo!

    • #22736
      Romy H
      Participant

      I Lost my twin June 18th 2020. She went from walking August 2019 to passing away in that short of amount of time. Her last months were filled with people just falling away! She was the social butterfly of us two. All the wonderful friends she used to talk about stopped calling her and almost no one stopped by. I was traveling a long distance by bus to spend weekends at their home to care for my twin. To visit her and show her the love that she needed to see! This went on for several months while other people just ignored her! All the people she would help, all the friends that needed her to do all these favors before? People online would say they would pray for her. They offered her no emotional or in person support? She said those are empty words unless you back it up by an action. I completely understand what you are saying with your post. But a true friend and a loving family member would not do this. I never shied away from being with my twin. It was the greatest and only gift I could give her was my time and love towards the end. I hope the people around you wake up in a hurry to how important you are to them! I recently had foot surgery which put me in bed for the past 6 weeks. As I’m struggling to walk now, I think about all of you with ALS! I am blessed at this point not having symptoms but I’m not out of the woods for that risk. I have to do foot surgery to the other foot in November. So for a full 6 months I will be spending most of my time in bed and my husband has had to care for me. It is definitely not like having ALS but it gives me an experience of being bedridden for the first time in my life. The friends that said they’d stop by or help never did! Anytime my husband has to leave the island where I live on the boat or the ferry? I am alone all day and no one came over like they said they would. So I understand the failing of people around you even on a very small scale. My love and hugs to you during this tough road you are on. What people around you that fail you don’t realize? We all get to the same place just different ways. Kindness and love is what makes it better during that travel we all take in getting there.

    • #22742
      john hamilton
      Participant

      “I’m not dead yet by the way.” Boy! How many times have I muttered that to my wife! And I’m not even in a wheelchair…yet.

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